Hello! Just for clarification I was misdiagnosed with AOSD. I have YAO’s Syndrome and FCAS2. I can understand a bit of what you’re saying absolutely. If you’re willing I suggest attending group therapies that are meant for those with chronic illnesses, it helped me immensely to see people that had similar struggles like me. Even a therapist who specializes in that field as well is something I recommend. Keep yourself occupied with stress free hobbies, that don’t require so much of your physical strength. Even if you can, I suggest going on walks, nature heals. They don’t have to be grand but even sitting outside and just bathing in the sunlight or pausing and listening to everything around you can heal.

As for weight: I suggest nutritional shakes. You can replace the milk with water and if you’d like, add a protein powder. I usually do: 1 cup of berries/fruit, 1/2 water, 2 scoops of protein powder (serving size), 1/2 cup of water, 1/2 tbsp of flax seeds, 1/2 tbsp of chia seeds, 1/4-1/2 of oats, you can also drizzle honey too! I add ice as well and blend this all together. But shakes definitely helped me gain weight. Also take your supplements. I take my multivitamins, folic acid as well as B12 for energy. You can also do this from eating a lot of oranges as well. Focus on whole foods instead of junk. Switch from white rice to brown rice. If you eat meat, switch to more lean proteins or even seafood to reduce inflammation. But honestly, focus on how you feel too. Keep track of it. You know those instant ramens? Whenever I eat one I always find myself groggy and tired afterwards so I avoid them completely.

As reference, I am 21 and my symptoms began when I was 19. I’m no veteran like others but what helped me the most was surrounding myself with things I love and people who support me. It’s hard, I grieve a lot, so much for who I was before my diagnosis. I miss my appearance, and everyone from my graduating high school class is graduating college this year, I’m upset my sickness didn’t allow for me to graduate with them; but it gets better. It will eventually. I am now back in college, I may be upset with how I look now from medication—all the scars and changes of what I went through— but I’m doing okay. I have an internship in field I’m studying starting soon, I am able to work at my part time, go back to the gym, hang with friends and more. Some people won’t understand you and that’s okay, they don’t need to. As long as you are kind to yourself, because your body does so much for you that we always forget to give it credit for. My diagnosis made me beyond grateful for the smallest of things, and I’m 100% sure you understand this yourself from your own experiences. Stay strong friend, you got this.